Here are responses from The 5th Dementia band and their family members to my request for an update:
Carol Rosenstein (Music Mends Minds founder) on Irwin (Pianist with Parkinson’s and dementia):
Irwin has outlived his prognosis by 7 months. His cognition is almost zero, but he continually connects with the music that we play in our home almost nonstop daily. Does this mean that the music, together with unconditional love, has become a "pause button" allowing him to keep his spirits up and continue to live out his days at home with me?
Generally speaking, for those who are still capable of attending weekly rehearsals to enjoy the music and socialization together, I see their spirits high and camaraderie strong as ever. Although they continue to decline, I continue to ask myself if music and socialization are the keys to their strong functionality at their 11th hour?
Marina on Paul L (Pianist with Alzheimer’s):
Paul entered a memory care facility 14 months ago. His Alzheimer’s is progressing but he still plays piano three times per day for 20-30 minutes. (After every meal)
On Tuesdays, his community gathers at 3:15 for a weekly concert they call “Tuesdays with Paul.” They sit with their songbooks while singing and clapping to his beautiful music. Marina says the residents think of him as “their pianist”.
Paul loves visitors. He is still speaking and joking, always the life of the party. When he sits at his piano, morning, noon and night, he continues to bring joy to anyone listening.
“Music is the beautiful thread that has woven through his whole life, and continues to be…” Marina
Miriam on Michael (Violinist with Alzheimer’s and dementia):
Michael suffered a debilitating stroke in early 2019 and is now in an assisted living facility.
Happy new year. Christmas eve was, as always, festive but we missed Michael playing carols - a first. There will be and have already been a number of firsts and it’s painful.
Michael still seems to appreciate hearing music which we direct the ECHO to play when we are about but clearly, since his stroke, can no longer play which is a heartbreaker. In fact, since your film was made, he can hardly do anything that was seen on the screen. No talking, little recognition of others, no self feeding. Literally nothing. But he does enjoy sweets and holding hands and now and then smiling and kissing. He enjoyed the family’s being here over the holidays to some extent but it’s hard to know anything of what’s going on in his brain. It makes it harder for us to visit and see him in that state. So my visits are no longer on a daily basis. It’s simply too hard and I am struggling with what to do with my life. I am increasingly distant from people I had been friendly with but such is life in general as we age. We lose others and getting together becomes more difficult for all. That’s my update.
Carol Jean Hicks (Singer and musician with Parkinson’s):
You should get a good response since we all like to talk about ourselves ha ha! I am doing well. I feel good/normal most of the time. I have been enjoying learning Tai Chi for a year now, which is great because it’s outdoors once or twice a week in the mornings and keeps me a bit more steady on my feet. Keeps me busy with friends, too, because we do it together. I’m still quilting with a group of friends and singing with Music Mends Minds (5th Dementia) both of those pursuits give me great pleasure as well.
Our biggest family news & my most fun times lately have been with my grandson. He’s just learned to crawl and soon probably will walk. He will turn one year old on 02/02/2020. My own son, my daughter, and son-in-law and their new baby all live together up in San Francisco! Julia, who appeared briefly in the movie, and her husband Patrick have the cutest, sweetest baby, named Bruce. My husband and I have been flying up north or driving there as often as we possibly can. Julia started a new job and invited me to help her out the first week, so I gladly got to see a lot of Bruce earlier this month.
Thank you for thinking of us and keeping up the blog, too! I hope the movie does well and brings more attention to the Parkinson’s community. There are some promising research efforts underway so I always set some hope aside for a cure in this lifetime.
Denise Davis on her mother, Leola (Singer with Alzheimer’s and dementia):
Leola had a stroke in March (2019). She was weak after the Ativan they injected to keep her still during the scans {insert angry face emoji here} so I let UCLA staff talk me into rehab afterwards. I regret it because the rehab facility staff showed little evidence of dementia training, despite assurances I got on the tour. It left her with the bad habit of protesting loudly when her pants are pulled down to help her use the bathroom; pretty disruptive at her current facility. She doesn't get out much nowadays because I'm still so snowed under.
She's only been to rehearsal once or twice. I have a little music player with the concert songs. She enjoys singing to them when I play them for her. I rely on it to get her to focus on our singing while I hold her down during things like blood draws. It's easier than just pleading with her to "hold still." She still walks, although her current facility keeps her sitting a lot more than I'd like. She still feeds herself. So I'm VERY grateful for any independence she still has. Except for her birthday coming at the end of March, I can't think of anything positive to report. Probably why I use pictures for updates to friends and family, rather than explanations. Your trailers and the concert videos always provided a great opportunity.
Franne on Paul F. (Percussionist with Early onset Alzheimer’s):
Happy New Year!!!! To be honest not much has changed. Paul is still very happy!!! Still going to yoga 6 days a week, MMM twice a week, movies, Bernie Sanders rally’s, beach, downtown, museums, etc....
I’m working 24/7 and growing my biz. We go to the farmers market every Sunday and eat a scone and coffee in the car while listening to the Moth! See friends. Just trying to stay consistent and enjoy everything while we still can.
Gail (Singer with Parkinson’s):
My Parkinson’s is about the same; not really a major problem. Have a private trainer now 2 days a week. Working to regain normal posture; I hope. As usual my Restless leg condition is what makes some days and nights miserable. But keeping busy with my art classes and 5th Dementia is keeps me sane.
Meredith (daughter) on Diana (Singer with Parkinson’s and dementia):
Since the documentary, my mom has had continual cognitive decline with delusions and paranoia which she is being treated for with medicines. She and Debrah are no longer together and my mom is enjoying her time doing her boxing classes, art, band rehearsals and spending time with our family and her good friends. She continues to go to the theater with friends and often comes to my house to sing while I play piano in my living room. My mom continues to go to meditation on Sundays and enjoys going to the movies. She no longer drives and has caregivers around the clock managing her schedule and keeping her safe.
Pat (Singer with Parkinson’s):
How am I doing right now? I'm overwhelmed, actually. In addition to managing my own Parkinson's disease, I am caregiver to my husband, Bruce, whose peripheral neuropathy makes it extremely difficult to walk. He suffers from severe lower back spasms that now move down into both legs, immobilizing him. Our son, Ryan, who has COPD, moved home with us several years ago to help take care of me when I was falling on a daily basis. He is now on oxygen, and is unable to work or take care of things that need to be done around the house. With stress the primary foe of Parkinson’s, my disease is progressing, my gait has changed, and I am using a cane after experiencing a major fall a few weeks ago. I have developed shortness of breath, which accounts for the increased medical appointments. Balance is a real problem. However, I still maintain as full a schedule as possible. The 5th Dementia is a source of great joy in my life, and has given me the confidence to hold my own among my loving, supportive fellow singers. I continue to write my memoir and another book, and still enjoy my newest career as an older commercial and print model. My sense of humor sees all of us through every day, and I do not allow Parkinson’s disease to slow me down. I never talk about it outside of support groups, and only those close to me know I have it. Please let's make time for that cup of tea.
Gene (Music director, drummer with Parkinson’s):
As music director for MMM I see an opportunity to spark the latent music memory of our ensemble members toward the beauty of music. Too frequently this world of beauty, unfortunately, is often forgotten in these times. Given the opportunity, this musical beauty resonates with the heart, as our members have the courage to contradict the common notion of being a senior as a time to surrender to ill health. One of the reasons our concerts are so well attended is the joy that the audience feels by experiencing this warmth of determination. Year by year I only feel these precious qualities grow and mature and provide a shared experience of deep satisfaction.
Janice on Mike (trumpet player with early onset Alzheimer’s):
Mike’s Alzheimer’s has been progressing steadily. He seems to intuitively feel that he needs to be doing something but gets frustrated when he doesn’t know what it is. He has always been a person who has purpose. That purpose being to help others. It’s who he is. The Alzheimer’s has stripped the layers back to reveal that’s who Mike still is.
The music gives him purpose now. He brings his trumpet in his briefcase to rehearsals and that makes him feel like he’s going to work. He is so happy when he is in the MMM community. He feels like he is a part of something that he can contribute to. The music is something he can still do well. Alzheimer’s is a bizarre disease. He can’t put the mouth piece on his trumpet yet he can play it perfectly.
Although Mike is physically in good shape, mentally and cognitively he can no longer take care of himself. He needs help with day to day. He cannot communicate anymore and Janice, who use to be able to figure out what he wanted with a few words, is no longer able know what he is trying to tell her. He feels helpless and demoralized and Janice says it is heartbreaking to see him during the times he realizes his own helplessness.
As his full time caregiver, Janice feels the stress of their lives has lowered her resistance to illness so she has been sick constantly. She has looked into finding Mike a place to live that is affordable, has good, kind and capable care but her search is still on. There is no upside to Alzheimer’s disease.
Joanie on Don (Singer with Parkinson’s):
Don has been in the hospital for the last 2 weeks (again). He had a UTI which is common for people living with Parkinson’s disease. Parkinson’s has taken away Don’s ability to swallow, talk and sing but he listens to music constantly. Joanie thinks and hopes that the music still brings him some happiness.
Peter (Saxophonist with traumatic brain injury):
Truthfully I feel confused. I have a new apartment that is beautiful, with tennis courts, a gym, and pool. I may be able to start surfing again and that makes me extremely happy. I recorded with a heavy metal group. I am rehearsing classical flute by playing Bach sonatas. My personal suffering has been immense, so is my loneliness. I gave life last year my very best effort but I am suffering from some physical and psychological exhaustion. I was in the ICU last year with high blood pressure but my health is now better. I walked 2 miles last weekend and I am always walking uphill in the Hollywood Hills. Life is difficult and confusing but full of beauty. Playing with the 5th Dementia has given me lots of pleasure, discipline and joy.
Susan (daughter) on Carolyn (Singer with Alzheimer’s):
The past year has been one of significant decline for my mom.. She was hospitalized last Christmas and that resulted in a shift from a part time caregiver, to needing 24/7 coverage. We were able to enjoy a family vacation in August to La Jolla, where she had a chance to visit with longtime friends as well as a trip to the Del Mar racetrack!
She still recognizes family and friends, expressing her love for all, but communication has become challenging. Walking and movement is also increasingly difficult. Music continues to lift her spirits and participating in the group is even more uplifting. We feel lucky to have a compassionate team of caregivers and family who love and understand her as this disease takes its cruel toll.
Kelly (harmonica):
I am living with my wife in Los Angeles, still playing weekly at the VA Hospital with my band “The Oldies But Goodies” to help raise moral of the Veterans and attending music programs at the Culver City Senior Center.
Gary Le Mel (Singer with Lewy Body and dementia) passed away in July 2019. Gary was the harmony for The 5th Dementia band. His beautiful voice and warm soul are sorely missed. Click here for a link to Billboard’s obituary.
Carol Hick’s daughter, Julia with husband Patrick and grandson, (Carol’s) Bruce
Marina and Paul
